Have Welsh organ consent laws made a difference to patients waiting for transplants?

But two years since its inception, some are now questioning whether the legislation has made any real difference to Welsh patients waiting for transplants?

On tonight’s Y Byd ar Bedwar on S4C, 24-year-old Llio Dudley from Garndolbenmaen, who herself received a kidney from her sister two years ago, travels around Wales to discuss presumed consent and to meet some of the people on the transplant waiting list.

242

people are currently on the transplant waiting list in Wales.

At the NHS Blood and transplant office in Tongwynlais, Llio meets specialist nurse Lucy Barnes. She is called by doctors to discuss organ donation with a patient’s next of kin when survival is unlikely.

Lucy Barnes is transplant specialist nurse. Credit: ITV Cymru Wales

We look at the organ donation register to see whether somebody’s made a decision regarding organ donation - whether they’ve opted in or out. Then, it’s a conversation with the family. We have to ensure they understand the situation, that the patient isn’t going to recover. We give them time to come to terms with that news, and then we discuss organ donation as an option.

– Lucy Barnes, specialist nurse

21

Welsh patients refused to release the organs of their loved ones for donation last year. (Welsh Gov)

I must say I don’t really understand it. Nurses still speak with families even if the patient has opted in. If someone has done that, why is a conversation necessary? That person has made their decision.

– Llio Dudley

27

Welsh patients died while waiting for a transplant in 2015/16.

The number of transplants to Welsh patients from deceased donors appears to have remained fairly steady:

157 in 2013/14

128 in 2014/15

168 in 2015/16

135 in 2016/17

67 in the first 2 quarters this year

10%

increase in the number of people on waiting list compared with two years ago.

Health Secretary Vaughan Gething maintains these statistics do not demonstrate the policy has failed.

It’s hard to say it’s got anything to do with the policy. More people have opted in. But more people have actively taken the decision to opt out too.

This next year, we’re really focussing on the importance of the family conversation. But after five years, I think we’ll be in a more rounded place to see whether it has really made a difference to look at the numbers of that five years and see where we are.

I certainly hope we’ll see an improvement in the number of donations taking place.

– Vaughan Gething, Health Secretary

Since the law was implemented on December 1st 2015, the Welsh Government say the presumed consent law has been applied 64 times. But the organs of just 27 of those people have been transplanted to patients.

80

organs have been transplanted from patients in Wales since the law change in 2015.

According to the NHSBT, it is impossible to say these are additional organs as the families would previously have been consulted.

Wales is the only nation in the UK to have brought in presumed consent legislation. But despite the change in the law here, it does not mean that organs donated in Wales are destined for Welsh patients.

When asked whether those organs were donated to Welsh patients, the NHSBT said it would take a long time to retrieve the relevant information.

They also explained that organs could be given to those in need in other UK countries or the EU but that Welsh patients could also receive organs from donors in other parts of the UK.

Only 11

people in Wales have received an organ transplant under the new law.

Two years ago, when the law was implemented, I had high expectations that the presumed consent law would make a big difference to those on the transplant waiting list in Wales.

After looking at the statistics and speaking to people all over Wales, there doesn’t seem to be much difference at all since the law came into force. That’s disappointed me - I hoped there would have been an improvement in two years.